Agency, Autonomy and Capacity of
People with Psychosocial Disabilities
Presentation for Conference:
The intersection of mental health and human rights in South Africa
Hosted by:
South African Institute for Advanced Constitutional, Public, Human Rights and International Law, a
Centre of the University of Johannesburg
On: 26 November, 2015
Johannesburg, South Africa
By: Annie Robb
The Ubuntu Centre
I speak from a perspective of a person living with a psychosocial disability and represent the views of our
organization, The Ubuntu Centre, which is a Disabled Peoples Organization.
A common identity of users and survivors of psychiatry in South Africa has grown with the insider view
of how we experience what society calls “mental illness” and what it means in terms of our positionality
in society. Being diagnosed as “mentally ill”, with the associated stigma of being weak, unreliable,
dangerous, and not able to think for ourselves and other discriminatory and patronizing beliefs, together
with the loss of opportunities that accompanies the labels, is a shared experience among us. Establishing
our identity is a constitutive process, embedded in a consciousness and the language that lays bare the
binaries of what it is to be valued or not. Those designated as being mentally healthy are more valued,
perceived more productive and hence are better resourced whilst mental illness indicates madness, a
way of being that is not esteemed, regarded as suffering, not valued, unproductive and often with
limited access and barriers to resources. This restricts equitable access to human rights. Bifurcated
notions, of what is valued and what is not, strike at the very heart of what it is to be regarded as having
a fully respected dignified personhood. The “other” is discriminated against. In South Africa, these
bifurcated notions and marginalizing mechanisms of power still dangerously challenge tolerance of
diversity in our society.
This is how we came to find our identity in the disability movement in the 1980’s, where it was accepted
that our impairments together with the interaction of social barriers is a disability, a psychosocial
disability. The political call of the International Disability Movement around the world is ‘Nothing About
Us Without Us’ and this indicates the demand for the first-person voice of people with psychosocial
disabilities to be heard as part of the public discourse surrounding mental health. We recognize the
importance of the UN Convention on the Rights of People with Disabilities (CRPD) as a powerful
mechanism to claim our rights.
The negotiation of the CRPD and the resulting wording of Article 12, and Article 14, was a hard won
victory for people with psychosocial disabilities. During the negotiations of the CRPD it was intentional
to not single out or separate people with psychosocial disabilities and people with intellectual
disabilities from everyone else during these negotiations. This was the position of World Network of
Users and Survivors of Psychiatry and Inclusion International, and the International Disability Caucus as a
whole. It was accepted by States. It was a core principle of the International Disability Caucus that the
convention should be equally relevant to all people with disabilities irrespective of the type of disability.
We know that when we get singled out, our rights get taken away.
A total presumption of legal capacity for all is desirable but this must be accompanied with the
corresponding State obligation to implement the necessary support to exercise this right. The right to
equal recognition before the law implies that legal capacity is a universal attribute inherent in all
persons by virtue of their humanity and must be upheld for all persons with disabilities on an equal basis
with others. This view, as expressed in General Comment No. 1, is supported by many people with
psychosocial disabilities in South Africa who believe denial of their autonomy and decision making
negates their dignity as full persons. This is irrespective of a person’s abilities that are judged by other’s
perception of our mental capacity. There can be no equality between people if someone else has the
authority to decide about my decision-making. It was important that we be able to establish our
autonomy to exercise our agency. Essentially this is the power to claim rights previously denied so that
we be recognized as full citizens that can enter the public discourse and participate in decision making
surrounding legislation, policies and programs, especially those that directly concern us. We believe it
will improve the quality of our life.
With SA’s liberation in 1994, we inherited a legacy of colonialism and apartheid. The existing
marginalization, inequalities and lack of human rights in the health care system necessitated urgent
attention. Mental health legislation reform began in South Africa before the CRPD era with the resulting
Mental Health Care Act 2002 and a Mental Health Policy in 2013. This was based on an acceptance that
the deprivation of rights would be reduced, least restrictive measures introduced and surrogate decision
making being acceptable but making space for procedural safe guards. This was within an ideological
belief system that had emerged from a historic model of segregation and social control but had been
influenced by the establishment in late 20th century of universal human rights and the growth of the
influence of the medical model of care. The prevailing legislation and policy that emerged hinges on two
main premises which are interlinked: the first, openly formulated, is that legal capacity is not an
absolute right. The second is the assumption that psychiatric treatment is by definition beneficial and
harmless and should be the choice. This paternalism is deemed enough in itself to justify the use of
coercion and denial of legal capacity.
The Convention on the Rights of People with Disabilities (CRPD) directs mental health professionals to
escape the outdated principle of paternalism, and to instead respect and implement the full human
rights, dignity and autonomy of those they serve. The absolute prohibition on forced interventions, as
elaborated on in the General Comment of 2014 by the CRPD Committee requires psychiatrists and other
health professionals to engage with people on a new basis that fully respect their will and preferences.
This requires services and approaches to be offered with free and informed consent. It also indicates
that there is a clear right to refuse. Substitute decision-making, in the name of protecting the rights and
interests of the person, undermines the irrefutable presumption that all are equal before the law. This
must hold true too at times of vulnerability of emotional crisis and distress. A person’s legal capacity
must not be weakened, denied or substituted. Ubuntu supports the informed consideration of the
General Comment No. 1 that mental capacity, which is sometimes framed in legislation as a ground for
denial of legal capacity, is not an “objective, scientific and naturally occurring phenomenon” [para. 14]
and that it is never possible to accurately assess the inner workings of another person’s mind, nor is it
justifiable to limit a core human right on such a basis. Rights are not abilities and we cannot conflate the
two.
We are aware that this leaves a lacuna in how now to understand and implement a new status quo that
was created when in 2007 South Africa signed and ratified the CRPD, having no reservations. The
importance of Article 12 cannot be understated. Article 12 underpins all other guarantees of the CRPD.
Only by ensuring equality before and under the law, and the legal capacity of all persons with
psychosocial disabilities, will we be able to enjoy all our human rights without limitation. This includes
access to supports and services which is a necessary component of the rights of access to justice, of
living independently and being included in the community, of home and family life, education, health,
habilitation and rehabilitation, work and employment, adequate standard of living, and culture,
recreation and sport. This should apply to all living in South Africa as all of us are vulnerable to a break
down or emotional distress or physical health crisis where we would need support in decision making.
Any suggestion that the current status quo should be maintained, whereby our decision-making capacity
is not respected or supported, and is thus devalued, can only further stigmatization. Exploiting and using
the stigmatizing notion of an “incapacitated” or “unsound” mind that cannot make “good” decisions to
sustain the argument for the continuation of existing discriminatory practices can only further entrench
and exacerbate stigma and exclusion experienced by persons with psychosocial disabilities. This is
reflected in the Electoral Act 1998 where persons of “unsound mind” and those detained under the
MHCA 2002 are excluded from the voters roll. If we can express the will and preference to participate in
voting, we want too, just like any other South African. No one else is examined on their suitability to
participate. In this and other ways, we remain disempowered to determine our life choices. Barriers to
active participation and being involved in decision making processes about our lives, policies and
programs that directly affect us are severely compromised while our legal capacity is not recognized.
How can we negotiate our lives from a positionality of disempowerment, oppression and lack of
recognition of equal status as citizens?
Mental health care services are an important service, but only if free of coercion and force. These are
medical services that will also require the principles of reasonable accommodation, accessibility and
respect for our autonomy. As said in General Comment no. 1, “States Parties must ensure that accurate
and accessible information is provided about service options and that non-medical approaches are
made available.” However, mental health care services, including non-medical alternatives, faith based
and traditional treatments, are susceptible to human rights violations. We cannot compromise our
autonomy for the right to mainstream health or even other treatments when there are services that risk
violations rather than provide protections. Without our autonomy to make choices we could be further
disabled as we struggle with negative side effects of inappropriate medications, the stigma and trauma
associated with forced hospitalizations and treatments that we may experience as cruel, inhuman,
degrading, violent and abusive. It would be irresponsible to believe that we could negotiate a
transformed mental health service without our autonomy respected and safe guarded by legislative
measures including mechanisms for supportive decision making that respect the autonomy, will and
preferences of the person.
Maintaining the paternalistic ideology of “best interests” represents a standpoint that will lead to
ignoring any meaningful engagement and involvement with those that challenge their beliefs and
methods, and rather uncritically perpetuates oppressive practices that disempower, thereby
maintaining people with psychosocial disabilities as excluded and on the margins.
General Comment No. 1 rejects the practice of substitute decision, and in situations where, “after
significant efforts have been made, it is not practicable to determine the will and preferences of an
individual, the “best interpretation of will and preferences” must replace the “best interests”
determinations. This respects the rights, will and preferences of the individual” [p. 5]. This we believe is
an acknowledgement that in rare instances, where persons cannot express their will and preferences
even with support, the decisions taken must take into consideration all information available about the
person’s will and preferences that directs a decision. We take these concerns of balancing negative and
positive rights seriously. Supported decision making and what exactly this means and how it will be
structured needs still to be explored, negotiated with extensive consultation with people with
psychosocial disabilities and then legislated.
Similarly, we take seriously the duty of people with psychosocial disabilities, on an equal basis with
other members of society, to refrain from harming others. We accept, as does the CRPD Committee in
its Guidelines on Article 14, that we remain subject to the criminal law, and call for equal rights, noting
the presumption of innocence for all, to a fair trial that includes support and accommodations to ensure
access to justice. Article 14 absolutely prohibits detention on the basis of a psychosocial disability,
including detention that is said to be based on danger to oneself or others.
Questions will continue for those rare cases, emergencies and alike. General Comment No. 1 does not
make such extreme situations into a principle that justifies exceptions to the right to legal capacity.
Instead it assimilates them into the overall standard in a way that maintains the dignity and autonomy
of the person who retains the right to overrule any interpretation if it becomes possible to express their
will and preferences again. We need to investigate numerous innovative methods which have proven
their worth, such as the Soteria project, the Hearing Voices Movement, Open Dialogue, or genuine peer
support when we approach crisis in its most “difficult” presentations and in ways that do not harm or
violate a person’s human integrity. We need to find new ways to join the (r)evolution and
transformation towards finding meaningful supports that are CRPD compliant for people with
psychosocial disabilities.
Post-CRPD looks beyond the entrenched positions of medical mental health services and attempts to
open new ways of approaching psychosocial disability. Crucially we argue that the voices of people with
psychosocial disability take center stage with equitable power relations so as to engage with social
transformation towards full inclusion. This must also include practical measures to ensure independent
assisted living where necessary so as to prevent our segregation by institutionalization and
homelessness due to poverty.
Our just equitable inclusion in society of our diversity must be defined on our terms within a human
rights paradigm. It is a political goal to contest and transform our subject position and establish that our
agency, autonomy and that our legal and mental capacity is respected.